It is better to look ahead and prepare than to look back and regret. My clinical speciality is in end of life care. I have sat with bereaved families who have, in their grief, expressed regrets that they never had conversations about what their loved one wanted as they became older or more frail or more ill. They could not face talking about it.
When my friend and neighbour’s husband was becoming very ill, I asked if they had had a conversation about what he was hoping for in the coming weeks and days. They had discussed his hopes and wishes, what treatments and care he did and did not want with their family doctor and hospital doctors, and the relevant information was documented and shared between services.
When his condition worsened, his wishes changed. He told her that he did not want to go back to hospital, and only wanted treatments that might help his symptoms, not prolong his life. His changing wishes were documented and shared again. With the support of the health and social care services he was able to stay at home where he died peacefully. She did not have any regrets, as she knew it was what he wanted.
It is of benefit to all of us to plan and discuss these matters while we are fit and well. Life is unpredictable, and we do not know what is around the corner.
We only get one chance to get things right when someone dies. If I become unwell with a deteriorating condition, I will want to include my family and professionals who are looking after me in these discussions so that we can have shared decision making. I will want to review them regularly, as my feelings may change. I want my family’s involvement in case I become unable to speak for myself. I do not want professionals to make decisions on my behalf without including me and those important to me.
There were concerning reports that decisions about people’s end of life care were being made without involving them, or their families, during the pandemic. The Care Quality Commission conducted a review and shared their findings in their report ‘Protect, Connect, Respect – decisions about living and dying well’.
Some health and social care professionals told the CQC that they were worried that other professionals lacked the confidence to challenge decisions. Barriers included GPs and care workers not wanting to overturn clinical decisions made in a hospital setting, and nursing staff feeling unable to challenge the decisions of senior doctors. In some areas, the CQC found that clinicians, professionals and workers did not feel able or supported within their organisation to speak up.
During the pandemic, when family members were separated from their families, health care workers were the only people able to support and advocate for a person’s wishes.
The CQC report highlighted how important being able to speak up safely is.
That is why I am pleased that the National Guardian’s Office is one of the 28 named organisations who have supported the development of the Universal Principles for Advance Care Planning.
The six Universal Principles for Advance Care Planning are for the person, those important to them, practitioners, and organisations involved in supporting Advance Care Planning conversations and honouring their outcomes.
The sixth principle is: “Anyone involved in Advance Care Planning is able to speak up if they feel that these universal principles are not being followed”.
This final principle should be applied across all settings throughout the health and care system to foster a culture of speak up, listen up and follow up.
For workers, in situations which are complex and sensitive like Advanced Care Planning, having an alternative person to speak to, like a Freedom to Speak Up Guardian, can give them the confidence to raise matters, knowing that they will be listened to, and action taken.
There are now over 800 Freedom to Speak Up Guardians, not only in primary and secondary care but also in hospices and independent providers. The Department of Health and Social Care White Paper ‘People at the Heart of Care Adult Social Care Reform’ sets out plans to explore ways in which Freedom to Speak Up Guardians can be introduced in the social care sector.
To be able to talk about illness, death and dying is something as a society we need to get better at.
But we also need to have the confidence to speak up when we feel something is not as it should be, or if it can be improved. That confidence comes from working in a supportive culture, which welcomes speaking up. Fostering a Speak Up, Listen Up, Follow Up culture will help to make these conversations easier.